lgbt health: a case study of politics and data collection

Scout health consultant www.scoutout.org [email protected] 401.263.5092

LGBT Health: a case LGBT Health: a case study of politics and study of politics and data collectiondata collectionAPHA ConferenceAPHA ConferenceNovember 6, 2006November 6, 2006Boston, MABoston, MAScout, Ph.D.Scout, Ph.D.


AbstractAbstractThe gold standard for population-based data collection is the federal surveys used to establish The gold standard for population-based data collection is the federal surveys used to establish morbidity and mortality benchmarks for different population groups. But these surveys often do morbidity and mortality benchmarks for different population groups. But these surveys often do not collect data on lesbian, gay, bisexual and transgender (LGBT) behavior or identity. Despite not collect data on lesbian, gay, bisexual and transgender (LGBT) behavior or identity. Despite this, researchers have used a series of smaller-scale surveys or proxy markers in larger this, researchers have used a series of smaller-scale surveys or proxy markers in larger surveys to uncover a consistent pattern of adverse health outcomes for this population group. surveys to uncover a consistent pattern of adverse health outcomes for this population group. This presentation will explore the persistent and deleterious effects of politics on the efforts to This presentation will explore the persistent and deleterious effects of politics on the efforts to add LGBT data collection questions to the gold-standard federal surveys. A variety of add LGBT data collection questions to the gold-standard federal surveys. A variety of information will be presented, including related political opposition occurring in the federal information will be presented, including related political opposition occurring in the federal health arena, state success efforts at adding LGBT data collection questions, and the newest health arena, state success efforts at adding LGBT data collection questions, and the newest data emerging from California debunking the myth that asking if someone is LGBT constitutes data emerging from California debunking the myth that asking if someone is LGBT constitutes a sensitive question (and therefore needs special extra expense management in the survey a sensitive question (and therefore needs special extra expense management in the survey process). The case of the CDC's efforts to add an LGBT data collection question to their Adult process). The case of the CDC's efforts to add an LGBT data collection question to their Adult Tobacco Survey will be presented to highlight the political opposition to this effort – despite the Tobacco Survey will be presented to highlight the political opposition to this effort – despite the depth of sound science supporting the need for data collection on this issue. The impact of this depth of sound science supporting the need for data collection on this issue. The impact of this political opposition will be discussed, and used as a platform to show how small population political opposition will be discussed, and used as a platform to show how small population groups are especially vulnerable to population-based assessment of health needs. groups are especially vulnerable to population-based assessment of health needs.

Learning Objectives:Learning Objectives: List instances in recent past when politics influenced data collection related to LGBT health.List instances in recent past when politics influenced data collection related to LGBT health. Analyze the impact of supressed data collection on LGBT health knowledge and interventions.Analyze the impact of supressed data collection on LGBT health knowledge and interventions. Articulate how small populations are particularly vulnerable when using population-based approaches to Articulate how small populations are particularly vulnerable when using population-based approaches to

identifying health disparities.identifying health disparities.


Story not studyStory not study

This is a rarely discussed territoryThis is a rarely discussed territory There is no citable “evidence” of much of what There is no citable “evidence” of much of what

is presented here is presented here All gov’t officials were guaranteed anonymityAll gov’t officials were guaranteed anonymity Gov’t processes are not transparent, full Gov’t processes are not transparent, full

information on some events will likely never be information on some events will likely never be knownknown

It is necessarily anecdotalIt is necessarily anecdotal Many things deliberately not disclosed hereMany things deliberately not disclosed here


One investigators One investigators storystory


20002000

Historic that sexual orientation Historic that sexual orientation (SO) was included in draft (SO) was included in draft version of Healthy People 2010version of Healthy People 2010

Then excludedThen excluded Community advocates Community advocates Final inclusionFinal inclusion


20002000

“DNC = data are not collected”

Sexual orientation DNC, DNC, DNC


2000-1 – Climate change2000-1 – Climate change

HRSA commission of HP2010 HRSA commission of HP2010 companion document on LGBTcompanion document on LGBT

First plan = government First plan = government document, like othersdocument, like others

Post election plan = private Post election plan = private documentdocument


2001 – Climate change2001 – Climate change

HRSA disbands LGBT liaison officeHRSA disbands LGBT liaison office SAMHSA puts out LGBT health SAMHSA puts out LGBT health

book, later LGBT information taken book, later LGBT information taken off their websiteoff their website


2001 HHS LGBT Strategic 2001 HHS LGBT Strategic PlanPlan

300-400 page document, over ½ yr 300-400 page document, over ½ yr work by manywork by many

Cross agencyCross agency Listing all current activitiesListing all current activities Made recommendations, including Made recommendations, including

formation of office on LGBT healthformation of office on LGBT health


2002+2002+

Researchers warned to avoid “gay Researchers warned to avoid “gay or lesbian” in proposalsor lesbian” in proposals

““for a while they scrutinized for a while they scrutinized contracts, we couldn’t use gay or contracts, we couldn’t use gay or lesbian, we had to find other words”lesbian, we had to find other words”


2002 LGBT data catch-22 2002 LGBT data catch-22

At National Conference on Tobacco or At National Conference on Tobacco or Health, a federal official involved in Health, a federal official involved in HP2010 warns; LGBT facing expulsion HP2010 warns; LGBT facing expulsion due to lack of datadue to lack of data

There is consistent evidence of health There is consistent evidence of health disparitiesdisparities

But the SO question is not asked on key But the SO question is not asked on key federal health surveys federal health surveys


Objections to SO data Objections to SO data collectioncollection

It’s a question about sex, we need to It’s a question about sex, we need to handle those in very special wayshandle those in very special ways

It costs over $1 million to add a question It costs over $1 million to add a question to main survey, NHIS.to main survey, NHIS.

Why do we need to? Where is the Why do we need to? Where is the evidence? evidence?


2003 “Witchhunts”2003 “Witchhunts”

Coalition for traditional family values Coalition for traditional family values creates list of “suspect” HHS researchcreates list of “suspect” HHS research

Including many projects on LGBT healthIncluding many projects on LGBT health Thru allied Congresspeople, they get Thru allied Congresspeople, they get

projects investigated + pressprojects investigated + press Waxman + head of NIH stands by need Waxman + head of NIH stands by need

to let science drive researchto let science drive research


2003 CDC “expert panel” 2003 CDC “expert panel” on LGBT surveillanceon LGBT surveillance

Convened to get best strategies for Convened to get best strategies for addition of LGBT questions to Adult addition of LGBT questions to Adult Tobacco Survey (ATS)Tobacco Survey (ATS)


2004 CDC tries to test 2004 CDC tries to test best questionsbest questions

Why need best question? NHANESWhy need best question? NHANES Planned cognitive testing to determine Planned cognitive testing to determine

best SO and gender identity (GI) best SO and gender identity (GI) questions to add to ATSquestions to add to ATS

Testing yanked mere weeks before Testing yanked mere weeks before occurring – could not get approval.occurring – could not get approval.

Note – history complicated, may not have Note – history complicated, may not have been political, but never transparentbeen political, but never transparent


20052005Request to Edit Title of Talk On Gays, Suicide Stirs IreRequest to Edit Title of Talk On Gays, Suicide Stirs IreHHS Is Being Accused of MarginalizationHHS Is Being Accused of MarginalizationBy Rick WeissBy Rick WeissWashington Post Staff WriterWashington Post Staff Writer

Wednesday, February 16, 2005; Page A17Wednesday, February 16, 2005; Page A17 A federal agency's efforts to remove the words "gay," A federal agency's efforts to remove the words "gay," "lesbian," "bisexual" and "transgender" from the program of "lesbian," "bisexual" and "transgender" from the program of a federally funded conference on suicide prevention have a federally funded conference on suicide prevention have inspired scores of experts in mental health to flood the inspired scores of experts in mental health to flood the agency with angry e-mails.agency with angry e-mails.


2005 CDC relaunches 2005 CDC relaunches testing of survey testing of survey questionquestion

But ATS has already launched, with a But ATS has already launched, with a “best thinking” SO question“best thinking” SO question

Report still coming from this workReport still coming from this work


2006 – CDC refunds 2006 – CDC refunds tobacco networkstobacco networks

[Federal Register: June 2, 2000 (Volume 65, Number 107)] [Notices] [Federal Register: June 2, 2000 (Volume 65, Number 107)] [Notices] [Page 35348-35353] From the Federal Register Online via GPO [Page 35348-35353] From the Federal Register Online via GPO Access [wais.access.gpo.gov] [DOCID:fr02jn00-70] Access [wais.access.gpo.gov] [DOCID:fr02jn00-70] ----------------------------------------------------------------------- ----------------------------------------------------------------------- DEPARTMENT OF HEALTH AND HUMAN SERVICES Center for DEPARTMENT OF HEALTH AND HUMAN SERVICES Center for Disease Control and Prevention [Program Announcement 00086] Disease Control and Prevention [Program Announcement 00086] Cooperative Agreements for National Networks for Cooperative Agreements for National Networks for TobaccoTobacco Prevention and Control; Notice of Availability of Funds A. Purpose Prevention and Control; Notice of Availability of Funds A. Purpose The Centers for Disease Control and Prevention (CDC) The Centers for Disease Control and Prevention (CDC) announces the availability of funds for fiscal year (FY) 2000 for announces the availability of funds for fiscal year (FY) 2000 for cooperative agreements with organizations that can work with the cooperative agreements with organizations that can work with the following eight (8) priority populations: 1. African-Americans (AAs); following eight (8) priority populations: 1. African-Americans (AAs); 2. Hispanics/ Latinos (H/L); 3. Asian Americans/Pacific Islanders 2. Hispanics/ Latinos (H/L); 3. Asian Americans/Pacific Islanders (AAPIs); 4. American Indians/Alaskan Natives (AI/AN); 5. women; (AAPIs); 4. American Indians/Alaskan Natives (AI/AN); 5. women; 6. gays/lesbians6. gays/lesbians; 7. low socioeconomic status (SES) adults; and, ; 7. low socioeconomic status (SES) adults; and, 8. young people 8. young people


2006 – with a change2006 – with a change

[[Billing Code: 4163-18-PBilling Code: 4163-18-PDEPARTMENT OF HEALTH AND HUMAN SERVICESDEPARTMENT OF HEALTH AND HUMAN SERVICESCenters for Disease Control and Prevention Centers for Disease Control and Prevention National Network for Tobacco Control and PreventionNational Network for Tobacco Control and PreventionAnnouncement Type:Announcement Type: New NewFunding Opportunity Number:Funding Opportunity Number: DP06-602 DP06-602Catalog of Federal Domestic Assistance Number: Catalog of Federal Domestic Assistance Number: 93.28393.283Letter of Intent Deadline (LOI):Letter of Intent Deadline (LOI): January 19, 2006 January 19, 2006Application Deadline: Application Deadline: February 3, 2006February 3, 2006

I.I. Funding Opportunity DescriptionFunding Opportunity DescriptionThe purpose of the program is to prevent and reduce tobacco use and The purpose of the program is to prevent and reduce tobacco use and exposure to secondhand smoke and to eliminate tobacco-related exposure to secondhand smoke and to eliminate tobacco-related disparities by establishing a consortium of National Networks that can disparities by establishing a consortium of National Networks that can collaborate with and serve as a resource to CDC and OSH, Network collaborate with and serve as a resource to CDC and OSH, Network members, Network Partners, States, and other local and national members, Network Partners, States, and other local and national tobacco control organizations to provide culturally competent technical tobacco control organizations to provide culturally competent technical assistance regarding effective tobacco use prevention and control assistance regarding effective tobacco use prevention and control strategies for racial and ethnic populations, groups that demonstrate strategies for racial and ethnic populations, groups that demonstrate low socio-economic status, and low socio-economic status, and groups for which there is data to groups for which there is data to support a high prevalence of tobacco use and/or burden of tobacco support a high prevalence of tobacco use and/or burden of tobacco related morbidity/mortality.related morbidity/mortality.


““Group for which there is Group for which there is data to support…”data to support…”

2001 – CA Health Interview Survey (CHIS), 2001 – CA Health Interview Survey (CHIS), lesbians smoked at rates 75% higher than lesbians smoked at rates 75% higher than other women, gays 56% higherother women, gays 56% higher

2003 – CA LGBT Tobacco Survey, LGBT men 2003 – CA LGBT Tobacco Survey, LGBT men almost 50% higher; LGBT women, almost almost 50% higher; LGBT women, almost 200% higher200% higher

Across all studies, in all places, it’s consistent, Across all studies, in all places, it’s consistent, LGBTs smoke ~40-200% higher than others.LGBTs smoke ~40-200% higher than others.


Proud to sayProud to say

In 2006, CDC funded National LGBT In 2006, CDC funded National LGBT Tobacco Control Network*Tobacco Control Network*

I am the Network DirectorI am the Network Director For more information, please see our For more information, please see our

website, website, www.lgbthealth.orgwww.lgbthealth.org

* A project of Fenway Community Health, Boston, MA* A project of Fenway Community Health, Boston, MA


2006 – Where are we 2006 – Where are we now?now?

At least 2 states in their Adult Tobacco At least 2 states in their Adult Tobacco SurveySurvey

At least 8 states in their Behavioral Risk At least 8 states in their Behavioral Risk Factor Social Survey (BRFSS)Factor Social Survey (BRFSS)

At least 12 states in their Youth Risk At least 12 states in their Youth Risk Behavioral Surveys (YRBS)Behavioral Surveys (YRBS)

NHANESNHANES National Survey of Family GrowthNational Survey of Family Growth More at www.gaydata.orgMore at www.gaydata.org


2006 – Current promise?2006 – Current promise?

Researchers believe aggregating data from Researchers believe aggregating data from the state surveys into larger sample the state surveys into larger sample might be most promising route to might be most promising route to achieving large sample.achieving large sample.


Impact?Impact?

Hostile climate demoralizes advocates Hostile climate demoralizes advocates and researchersand researchers

Dissuades next generation Dissuades next generation researchersresearchers

Scares away needed non-LGBT Scares away needed non-LGBT championschampions


Impact?Impact?

“…“…lots of demoralization lots of demoralization and good people leaving”and good people leaving”


Impact?Impact?

Catch 22 leaves LGBT at risk for Catch 22 leaves LGBT at risk for policy exclusion, funding exclusionpolicy exclusion, funding exclusion

Less known about magnitude of LGBT Less known about magnitude of LGBT health disparitieshealth disparities

Needed LGBT health disparity areas Needed LGBT health disparity areas (e.g. tobacco) addressed too slowly(e.g. tobacco) addressed too slowly

Can we justify being in HP2020?Can we justify being in HP2020?


Who are the heroes?Who are the heroes?

The many scientists who have been The many scientists who have been tireless in advocating for science in tireless in advocating for science in the face of political oppositionthe face of political opposition

The creative members of the federal The creative members of the federal governmentgovernment

LGBT scientists who have risked their LGBT scientists who have risked their careers to address these health careers to address these health disparitiesdisparities


AcknowledgementsAcknowledgements

lgbt health: a case study of politics and data collection

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